Hi,
My husband was diagnosed with mild Crohn’s in 2019 after experiencing a bit of bleeding. He continued on with very mild symptoms and without treatment. Fast forward to this past March, he began experiencing a flare-up. He developed an abscess followed by a fistula. He ended up being admitted to the hospital early June. A CT Scan found severe inflammation throughout his entire colon. He spent 4 days there getting steroids, a blood transfusion and a Remicade infusion. He felt GREAT! There ended up being a miscommunication between the hospital and insurance and the continuation of Remicade did not get approved until 5 weeks after he was released. By this time he was tapering off of the prednisone and regressing quickly. He ended up back in the hospital. This time for 13 days. They did another CT scan which showed no change from the last time he was there. The GI at the hospital said it was the worst he’d ever seen. They did a scope and sent biopsies in to check for infection. He tested negative for both C-diff and CMV. They got him back on prednisone and he’s starting to feel good again. This time, he needed 2 blood transfusions and an iron infusion. He will be moving forward with Avosola. I’m not sure why they are doing that and not Remicade. Insurance reasons, I assume.
anyway, my fear is that as soon as he starts to taper off of the prednisone again, we’re going to be right back where we started and this with just become a vicious cycle. The GI at the hospital said worst case scenario, they do surgery to remove his colon but for us to not even think about that yet because we’re not even close to it being a thing right now.
I guess I’m just looking for some support or advice from more experienced people. My husband is taking things one day at a time but I have an anxiety disorder that causes me to obsess over the “what-if’s?” I’m concerned that this is going to totally take over and destroy his quality of life.
Looking for a light at the end of the tunnel.
My husband was diagnosed with mild Crohn’s in 2019 after experiencing a bit of bleeding. He continued on with very mild symptoms and without treatment. Fast forward to this past March, he began experiencing a flare-up. He developed an abscess followed by a fistula. He ended up being admitted to the hospital early June. A CT Scan found severe inflammation throughout his entire colon. He spent 4 days there getting steroids, a blood transfusion and a Remicade infusion. He felt GREAT! There ended up being a miscommunication between the hospital and insurance and the continuation of Remicade did not get approved until 5 weeks after he was released. By this time he was tapering off of the prednisone and regressing quickly. He ended up back in the hospital. This time for 13 days. They did another CT scan which showed no change from the last time he was there. The GI at the hospital said it was the worst he’d ever seen. They did a scope and sent biopsies in to check for infection. He tested negative for both C-diff and CMV. They got him back on prednisone and he’s starting to feel good again. This time, he needed 2 blood transfusions and an iron infusion. He will be moving forward with Avosola. I’m not sure why they are doing that and not Remicade. Insurance reasons, I assume.
anyway, my fear is that as soon as he starts to taper off of the prednisone again, we’re going to be right back where we started and this with just become a vicious cycle. The GI at the hospital said worst case scenario, they do surgery to remove his colon but for us to not even think about that yet because we’re not even close to it being a thing right now.
I guess I’m just looking for some support or advice from more experienced people. My husband is taking things one day at a time but I have an anxiety disorder that causes me to obsess over the “what-if’s?” I’m concerned that this is going to totally take over and destroy his quality of life.
Looking for a light at the end of the tunnel.
